Connecting. Learning. Growing.

The 2018 Family Gathering was held Nov. 16-18 in Baltimore, Maryland. We welcomed nearly 50 families and 200 attendees for a weekend of connection, learning, and growth. For a snapshot of the weekend's activities and to view the photo gallery, click here.

We are pleased to share recordings of presentations from the following speakers.

For translated subtitles of the recordings please follow these instructions. Please note that the subtitles provided are auto-translated. The translations are not professionally translated and may include some inaccuracies in names and meaning.

The IFOPA: An Overview of Family Services and Fundraising

Welcome Remarks and Your IFOPAExecutive Director, Michelle Davis, talks about the IFOPA and its growth and achievements over the past 30 years as well as the activities taking place at the 2018 Family Gathering.

Resource Connect: A Discussion GroupFOP community representatives discuss how they and their loved ones have used tools in a variety of ways to support continued independence, boost confidence and promote a balance for caregivers.

Jack Sholund suggests newly diagnosed FOP’ers take advantage of the opportunity to connect with other families experiencing the same situation.

“Don’t be afraid to seek other families that have a child or adult with FOP and share information. And whatever obstacles you or your family member may face, follow the interests that make you happy,” he advises.

When Jack was diagnosed with FOP in 1966, there wasn’t an IFOPA. There wasn’t a support group, or research moving forward, financial assistance (the Quality of L.I.F.E. Awards) for accessories and equipment needed to encourage independent living, words of advice in regard to schooling for a child with FOP, or get togethers for families.

But then there was Jeannie Peeper, and Dr. Kaplan. Jack was pen pals with Jeannie before the IFOPA existed, yet it was 25 years after his diagnosis before he met someone else living with FOP in person.

His favorite memory is attending the very first FOP symposium held in Philadelphia in 1991 with both of his parents. “I made friendships that still continue today. It was an honor to meet Dr. Kaplan and his team and to see how much he cares for his patients. There I learned many things that were helpful in my life.”

Being with the IFOPA from the start is a special experience for Jack. As one of the IFOPA’s original founders, he’s proud to see how the IFOPA has grown as a network of families who support and advise each other. The continued educational opportunities for medical professionals, as well as family meetings being held not only in the USA, but around the world, have been especially meaningful for Jack to witness. Jack knows raising funds for research is a high priority and appreciates how the IFOPA shares fundraising ideas to help friends and family of those living with FOP take an active role.

He also sees great value in the What is FOP? Guidebook that helps families understand necessary precautions for dealing with routine activities and medical situations. It was an incredible honor for Jack that his watercolor painting of a monarch butterfly was featured on the cover of the the Guidebook.

Jack’s role as an optimistic advocate for FOP education and awareness strengthen the foundation of everything he admires about the IFOPA, including the role the organization plays in getting the word out and finding more members with FOP from the USA and abroad. I see the IFOPA continuing to educate families and the medical profession here in the USA and around the world.

"It doesn’t matter if a person with FOP is five or 55, there are still things they can learn to help their life,” he reflects.